Noah M Werner, Melanie Schuette, Ramona Hagler, Jan Voth, Balázs Danajka, Patricia Kirschner, Markus Heibel, Tjalf Ziemssen, Uwe K Zettl, Sven G Meuth, Marc Pawlitzki, Lars Masanneck
{"title":"Rethinking EDSS-based ambulation assessment in multiple sclerosis using continuous variable monitoring.","authors":"Noah M Werner, Melanie Schuette, Ramona Hagler, Jan Voth, Balázs Danajka, Patricia Kirschner, Markus Heibel, Tjalf Ziemssen, Uwe K Zettl, Sven G Meuth, Marc Pawlitzki, Lars Masanneck","doi":"10.1186/s42466-026-00501-8","DOIUrl":"10.1186/s42466-026-00501-8","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system (CNS) characterized by relapses and progressive disability. The Expanded Disability Status Scale (EDSS), used to quantify disability, is based on single, discretely assessed and potentially inaccurate patient-estimated walking ability, whereas digital health technologies (DHTs) enable continuous activity monitoring and more objective assessment of real-world functional performance.</p><p><strong>Methods: </strong>In this prospective observational study conducted at two German centers, patients with relapsing-remitting MS (RRMS) underwent clinical assessments at baseline (V1) and study completion (V2). Walking distance and step counts were measured using a measuring wheel and pedometer, while continuous physical activity was assessed via smartwatch-derived metrics.</p><p><strong>Results: </strong>Sixteen patients with RRMS were included (median age 57.5 years [interquartile range (IQR) 49.25-63.25]; median EDSS 4.5 [IQR 3.5-6]). Patient-estimated walking distance at V1 showed moderate correlation with clinically measured distance (Spearman's ρ = 0.60, p = 0.013), with 12 of 16 patients misjudging distances relative to EDSS thresholds. Walking distance showed intra-individual variability between V1 and V2 (median absolute difference: 113.6 m). Median daily walking distance (ρ = -0.61, p = 0.0123), step count (ρ = -0.64, p = 0.0082), and peak steps (ρ = -0.69, p = 0.0032) correlated negatively with EDSS.</p><p><strong>Conclusion: </strong>Patient-estimated maximum walking distance demonstrated moderate agreement with clinical performance and frequently crossed EDSS thresholds, while clinical assessments varied substantially within individuals over the short study duration, underscoring the limitations of single evaluations. In contrast, smartwatch-derived metrics aligned with clinical measures, reflected EDSS scores, and captured real-world mobility.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13263936/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148240865","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Matthias N Ungerer, Dirk Bartig, Annika Moreno Agredo, Tobias Braun, Christoph Gumbinger
{"title":"Fiberoptic endoscopic evaluation of swallowing in German stroke units: a retrospective diagnosis-related group analysis (2019-2024).","authors":"Matthias N Ungerer, Dirk Bartig, Annika Moreno Agredo, Tobias Braun, Christoph Gumbinger","doi":"10.1186/s42466-026-00506-3","DOIUrl":"10.1186/s42466-026-00506-3","url":null,"abstract":"<p><strong>Background: </strong>Fiberoptic Endoscopic Evaluation of Swallowing (FEES) is a safe and effective tool for post-stroke dysphagia assessment. The German Stroke Organization implemented FEES quality benchmarks for stroke unit certification in 2025. This study establishes baseline data on FEES implementation across German stroke units.</p><p><strong>Methods: </strong>A retrospective analysis of national diagnosis-related group data (2019-2024) was performed. We analyzed data on cases with stroke unit treatment, examining coding of FEES, dysphagia, and PEG placement, and their relationships with stroke type, institutional service level, and patient demographics.</p><p><strong>Results: </strong>A total of 1,540,947 cases with stroke unit treatment were analyzed across the six-year study period. FEES procedures were coded in 2.7% of cases, increasing from 2.4% (2019) to 3.1% (2024). FEES coding was more common in cases with intracerebral hemorrhage (5.7%) and ischemic stroke (3.4%). Dysphagia was coded in 13.3% of cases, with higher rates in intracerebral hemorrhage (28.5%) compared to ischemic stroke (16.4%). Cases treated in comprehensive stroke units coded FEES procedures (3.6%) more frequently than regional (2.5%) and basic stroke units (1.5%). Sex-based disparities emerged: cases with males were coded with FEES more often (3.1%) than females (2.4%), despite dysphagia being documented more frequently among cases with females (males 13.0%, females 13.8%). The proportion of cases with documented dysphagia among those coded with FEES was 76.2% and remained stable throughout the study period, suggesting broadly consistent case selection.</p><p><strong>Conclusion: </strong>Documentation of FEES among cases with stroke unit treatment has increased but remains substantially below the dysphagia documentation rates, suggesting room for broader implementation. Sex-based disparities in FEES documentation need further investigation. Institutional factors impact documentation rates, indicating a need for tailored quality benchmarks by stroke service level. Improving reimbursement, staff training, and streamlined workflows could enhance access to FEES in German stroke units.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13261969/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148229856","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jan Purrucker, Kirsten Haas, Marilen Sieber, Viktoria Rücker, Peter U Heuschmann, Roland Veltkamp
{"title":"Author response to Zupan et al., Letter to the editor regarding \"Intracranial hemorrhage after ischemic stroke in patients on direct oral anticoagulants: results from a prospective observational study\" by Purrucker et al.","authors":"Jan Purrucker, Kirsten Haas, Marilen Sieber, Viktoria Rücker, Peter U Heuschmann, Roland Veltkamp","doi":"10.1186/s42466-026-00483-7","DOIUrl":"10.1186/s42466-026-00483-7","url":null,"abstract":"","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13227775/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148152745","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The brain health bundle: integrating evidence-based strategies to guide neurological prevention.","authors":"Eva Schaeffer, Daniela Berg","doi":"10.1186/s42466-026-00505-4","DOIUrl":"10.1186/s42466-026-00505-4","url":null,"abstract":"","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13227715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148152847","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Letter to the editor regarding \"Intracranial hemorrhage after ischemic stroke in patients on direct oral anticoagulants: results from a prospective observational study\" by Purrucker et al.","authors":"Matija Zupan, Mišo Šabovič, Senta Frol","doi":"10.1186/s42466-026-00484-6","DOIUrl":"10.1186/s42466-026-00484-6","url":null,"abstract":"","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13227714/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148152761","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Franziska Axhausen, Stephanie Wolff, Romy Baumgart, Borros Arneth, Anne Mrochen, Heidrun H Kraemer, Steffen Pfeuffer
{"title":"The use of cladribine tablets in patients with MS beyond the age of 50: experiences from a large tertiary German centre.","authors":"Franziska Axhausen, Stephanie Wolff, Romy Baumgart, Borros Arneth, Anne Mrochen, Heidrun H Kraemer, Steffen Pfeuffer","doi":"10.1186/s42466-026-00502-7","DOIUrl":"10.1186/s42466-026-00502-7","url":null,"abstract":"<p><strong>Background: </strong>Evidence for disease-modifying therapies in patients with multiple sclerosis (MS) aged over 50 years is limited because this population is often excluded from randomized trials. With aging, MS increasingly reflects progression independent of relapse activity (PIRA), while adverse event risk increases. Cladribine is an immune reconstitution therapy with established efficacy in younger populations, but real-world data in older patients, particularly after prior high-efficacy therapies, are scarce.</p><p><strong>Methods: </strong>We conducted a prospective observational study of 95 patients aged over 50 years with active MS treated with cladribine at a tertiary MS center in Giessen, Germany. Patients were stratified by prior therapy (treatment-naïve, platform therapy, high-efficacy therapy). Outcomes included relapses, MRI activity, confirmed disability worsening (CDW), confirmed disability improvement (CDI), no evidence of disease activity (NEDA-3/4), lymphocyte dynamics, adverse events, and serum neurofilament light chain (NfL).</p><p><strong>Results: </strong>Mean age was 55.9 ± 4.1 years, baseline EDSS was 2.5 ± 1.0. Total follow-up duration was 137 patient-years. Annualized relapse rate decreased from 0.66 before treatment to 0.044 during follow-up. Six relapses and six new T2 lesions (each 6.3%) occurred during follow-up. CDW was observed in 10 patients (11.8%), while 21 patients (24.7%) showed sustained CDI. NEDA-3 was achieved by 66 patients (77.6%) and NEDA-4 by 65 patients (76.5%). No clear differences between prior-treatment groups were observed. Serum NfL levels decreased during treatment. Lymphopenia was predominantly grade I-II. Infections were infrequent (27.4%) and mostly mild.</p><p><strong>Conclusions: </strong>Cladribine showed sustained effectiveness and an acceptable safety profile in MS patients over 50 years.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13227850/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148152773","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ruth Eumann, Janna Krahe, Imis Dogan, Ana Sofia Costa, Jörg B Schulz, Stella A Lischewski, Kathrin Reetz
{"title":"Psychological resilience in patients with Friedreich ataxia: a 6-year longitudinal analysis.","authors":"Ruth Eumann, Janna Krahe, Imis Dogan, Ana Sofia Costa, Jörg B Schulz, Stella A Lischewski, Kathrin Reetz","doi":"10.1186/s42466-026-00499-z","DOIUrl":"10.1186/s42466-026-00499-z","url":null,"abstract":"<p><strong>Background: </strong>Friedreich ataxia is a debilitating multisystem neurodegenerative disorder. Depression is more prevalent in individuals with Friedreich ataxia (14%-36%) than in the general European population (8.5%). While psychological resilience is known to influence mental health in other chronic conditions, its role in Friedreich ataxia remains underexplored.</p><p><strong>Objectives: </strong>We aimed to compare psychological resilience between individuals with Friedreich ataxia and healthy controls, assess associations with clinical or demographic characteristics, depression, and anxiety, and explore changes in resilience longitudinally.</p><p><strong>Methods: </strong>Participants were drawn from the Aachen site of the European Friedreich Ataxia Consortium for Translational Studies (EFACTS) registry. Resilience was measured using the Wagnild and Young RS-25 questionnaire. Depression and anxiety were assessed using the Hospital Anxiety and Depression Scale and Beck's Depression Inventory II. Student's t-tests were used to compare groups. Pearson correlations assessed associations between resilience, depression, and anxiety scores. Univariate and multiple linear regressions were conducted to identify factors associated with resilience. Longitudinal resilience trends were evaluated graphically, and a within-person analysis was conducted using paired-T-tests in participants with available data. Missing data were imputed in 10% of cases.</p><p><strong>Results: </strong>Overall, 61 participants (43 with Friedreich ataxia, 18 controls) were followed for up to six years. Median age was 30 years for individuals with Friedreich ataxia and 28 years for controls; 58.1% and 61.1% were female, respectively. At baseline, resilience scores were significantly lower in individuals with Friedreich ataxia (135.1 ± 25.3) than in controls (151.5 ± 12.2; p < 0.05). Resilience was strongly negatively correlated with depression (r = -0.85, p < 0.001) and moderately with anxiety (r = -0.65, p < 0.001). We observed an apparent decline in resilience in patients during the COVID-19 pandemic albeit not statistically significant in the within-person subgroup analysis (pre-COVID-19 143.1 vs 131.2 post COVID-19; p = 0.07, n = 18), possibly due to low sample size.</p><p><strong>Conclusions: </strong>Individuals with Friedreich ataxia display reduced resilience compared to healthy controls, which is associated with greater levels of depression and anxiety. Resilience remained stable over the disease course but appeared to decline during the COVID-19 pandemic, underlining the importance of strengthening resilience and mental well-being in this population.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13188261/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147978246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Damjan Mirkov, Adeeb Qabalan, Peter A Ringleb, Stefan Schwab, Karl Georg Haeusler, Ekkehart Jenetzky, Timolaos Rizos
{"title":"Clinical routines and structural resources for performing transoesophageal echocardiography on German stroke units.","authors":"Damjan Mirkov, Adeeb Qabalan, Peter A Ringleb, Stefan Schwab, Karl Georg Haeusler, Ekkehart Jenetzky, Timolaos Rizos","doi":"10.1186/s42466-026-00500-9","DOIUrl":"10.1186/s42466-026-00500-9","url":null,"abstract":"<p><strong>Background: </strong>Transoesophageal echocardiography (TOE) is essential for identifying cardiac sources of embolism in patients with acute ischemic stroke (AIS) or transient ischemic attack (TIA). As randomized controlled trials are missing, recommendations regarding echocardiography after stroke remain vague, and clinical routines and structural resources for performing TOE on stroke units may differ. We here examined structural conditions for performing TOE on certified stroke units in Germany, and evaluated factors that may influence the decision to perform TOEs.</p><p><strong>Methods: </strong>In this prospective exploratory cross-sectional survey, a standardized anonymous questionnaire was sent to all clinical leads of certified stroke units in Germany, supported by the German Stroke Society. The questionnaire focused on (a) on general characteristics of stroke units and logistics of TOE examinations and (b) local indication for performing TOEs, with a focus on factors that may influence this decision.</p><p><strong>Results: </strong>Data from 248 SUs (stroke units) were included into the analysis (response rate 71.1%). The reported median TOE rate was 23.0% (IQR 18-34). Lower TOE rates were related to increasing numbers of stroke patients (p = 0.048). Most TOEs were performed within 24-48 h after the request (49.6%). Longer waiting times for TOE were associated with level of certification (p < 0.001) and higher numbers of stroke patients (p = 0.002). The presence of a stroke unit cardiologist did not result into shorter waiting times (p = 0.238). In total, 23.8% of the responding stroke units do not have a standardized operating procedure (SOP) for indicating TOE. Though 50% of leads considered quantitative requirements for indicating TOEs, within certain clinical contexts and situations, our findings revealed a broad consensus among stroke unit leads concerning TOE indications.</p><p><strong>Conclusions: </strong>Despite limitations, our study provides valuable insights into performing TOE in hospitalized German stroke patients. This may facilitate the optimized use of TOE in hospitals and represent a first step towards the development of future guidelines and SOPs, in particular in the context of limited resources.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13188604/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147978286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Samra Hamzic, Omar Alhaj Omar, Linda Danielczik, Stefan T Gerner, Maxime Viard, Michael Bender, Heidrun H Kraemer, Priyanka Boettger, Martin Juenemann, Tobias Braun
{"title":"Radiologic drivers of dysphagia after intracerebral haemorrhage: a flexible endoscopic evaluation of swallowing-guided retrospective analysis on intensive care unit.","authors":"Samra Hamzic, Omar Alhaj Omar, Linda Danielczik, Stefan T Gerner, Maxime Viard, Michael Bender, Heidrun H Kraemer, Priyanka Boettger, Martin Juenemann, Tobias Braun","doi":"10.1186/s42466-026-00498-0","DOIUrl":"10.1186/s42466-026-00498-0","url":null,"abstract":"<p><strong>Introduction: </strong>Dysphagia is a frequent and clinically relevant complication after intracerebral haemorrhage (ICH) and is associated with increased morbidity and mortality. While radiologic severity and lesion characteristics are known to influence neurological outcome, their relationship with objectively measured dysphagia severity (DS) and swallowing management remains insufficiently defined. This study investigated the association between radiologic ICH burden and DS assessed by flexible endoscopic evaluation of swallowing (FEES), and examined the clinical impact of FEES-guided swallowing management in an neuro intensive care unit (ICU) cohort.</p><p><strong>Methods: </strong>We conducted a retrospective analysis of consecutive ICH patients treated in neurological ICU who underwent standardized bedside dysphagia assessment, with FEES performed when clinically indicated and feasible. DS and functional oral intake were quantified using the Fiberoptic Endoscopic Dysphagia Severity Scale (FEDSS) and the Functional Oral Intake Scale (FOIS-G). Multivariable regression models adjusted for age and clinical severity were used to examine associations between radiologic parameters (hematoma volume, location, ICH score, intraventricular and subarachnoid haemorrhage) and dysphagia outcomes.</p><p><strong>Results: </strong>Of 241 patients 120 (49.8%) were diagnosed with relevant dysphagia FEES was performed in 68 patients (28.2%) at a median of 13 days after admission. After FEES, the diet was modified in 67% of patients and the oral intake score improved from a median of one to four. Radiologic severity was independently associated with dysphagia outcomes: higher ICH score predicted lower odds of of favourable FOIS-G and FEDSS scores. Deep intracerebral haemorrhage, intraventricular haemorrhage and subarachnoid haemorrhage were associated with worse functional oral intake. FEES led to a modification of swallowing management in 67% of examined patients, most frequently allowing safer and more liberal oral intake compared with bedside assessment alone.</p><p><strong>Conclusion: </strong>In ICU-treated patients with ICH, dysphagia is common and closely linked to radiologic severity and lesion characteristics. FEES frequently reveals clinically relevant discrepancies between bedside assessment and actual swallowing function and substantially influences swallowing management. Integrating radiologic risk stratification with FEES-guided decision-making may improve safety, nutrition, and rehabilitation planning in this high-risk population.</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13170179/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147936474","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Felix Kohle, Franz Felix Konen, Ulrike Grittner, Daniel Schulze, Stefanie Glaubitz, Christopher Nelke, Christina B Schroeter, Niklas Huntemann, Peter Trillenberg, Julian Großkreutz, Benedikt Schoser, Charlotte Schubert, Jana Zschüntzsch, Michael Schroeter, Tobias Hegelmaier, Thomas Skripuletz, Jörn Peter Sieb, Tobias Ruck, Sven Meuth, Heinz Wiendl, Christian Wolfgang Keller, Jan D Lünemann, Sophie Lehnerer, Andreas Meisel, Frauke Stascheit
{"title":"Multicentric prognostic observational study on biomarker profile in immunotherapy-naïve patients with highly active generalized myasthenia gravis (PROGNO-MG): a study protocol.","authors":"Felix Kohle, Franz Felix Konen, Ulrike Grittner, Daniel Schulze, Stefanie Glaubitz, Christopher Nelke, Christina B Schroeter, Niklas Huntemann, Peter Trillenberg, Julian Großkreutz, Benedikt Schoser, Charlotte Schubert, Jana Zschüntzsch, Michael Schroeter, Tobias Hegelmaier, Thomas Skripuletz, Jörn Peter Sieb, Tobias Ruck, Sven Meuth, Heinz Wiendl, Christian Wolfgang Keller, Jan D Lünemann, Sophie Lehnerer, Andreas Meisel, Frauke Stascheit","doi":"10.1186/s42466-026-00482-8","DOIUrl":"10.1186/s42466-026-00482-8","url":null,"abstract":"<p><strong>Background: </strong>Myasthenia gravis has a variable disease course. Early identification of patients with a highly active disease is crucial to prevent myasthenic exacerbations and crisis, necessitating more aggressive immunotherapy. However, no biomarkers currently exist to identify patients at risk for highly active disease course.</p><p><strong>Objective: </strong>The PROGNO-MG study aims to identify blood-based biomarker signatures associated with a highly active disease course in immunotherapy-naïve patients with acetylcholine-receptor-antibody positive (AChR<sup>+</sup>) generalized Myasthenia gravis (gMG).</p><p><strong>Methods: </strong>This is an investigator-initiated prospective, multicentric, observational study. Seventy newly diagnosed immunotherapy-naïve AChR<sup>+</sup> gMG patients will be enrolled and followed up for 24 months. Blood samples and clinical data will be collected biannually. Biomarkers (calprotectin, neurofilament light chain, ITIH3, complement activation, kappa free light chains, and exploratory proteome-analyses and immune cell phenotyping) will be measured and their association with clinical outcomes will be evaluated.</p><p><strong>Perspective: </strong>The results will provide evidence for prognostic biomarkers, supporting risk stratification and early individualized treatment for AChR<sup>+</sup> gMG patients.</p><p><strong>Trial registration: </strong>The study is registered in the German clinical trial register (DRKS00035457).</p>","PeriodicalId":94156,"journal":{"name":"Neurological research and practice","volume":"8 1","pages":""},"PeriodicalIF":4.0,"publicationDate":"2026-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13169798/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147936537","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}